Questions and answers

By completing the questionnaire that you received, you provide important information on the health and quality of life of former childhood cancer patients.

This information is essential for achieving improvements in cancer therapies, follow-up care, and policy interventions.

Yes, your participation is still valuable. For us, it is important to know how all former patients are doing nowadays. This helps us assess the need for improved cancer therapies, follow-up care, and policy interventions.

That is why we ask you to fill in the questionnaire also if you do not face any health problems or other limitations in your everyday life.

Certain criteria must be fulfilled for you to be able to join. You must have been diagnosed with cancer before the age of 20 years in Switzerland. Furthermore, at least 5 years must have passed since your cancer diagnosis.

We draw on the Childhood Cancer Registry to identify all those eligible for study participation. If you think that you should be part of the study, please send an email to sccss.ispm@unibe.ch or use the contact form to contact us.

We are also interested in the sibling’s health and quality of life. This allows us to compare the health and quality of life of childhood cancer survivors to their siblings, who did not have cancer. Differences between survivors and their siblings help us to identify late effects that childhood cancer and its treatment may have.

Unfortunately, we are in no position to pay for your participation. Non-profit organizations fund our work; we do not receive any funding from commercial sources. We greatly appreciate the time you take for contributing to the study!

Late effects of childhood cancer and its treatment may affect many aspects of life and we want to obtain an extensive picture. Therefore, the questionnaire is quite comprehensive.

This are important aspects of all our lives. We would like to find out if former childhood cancer patients face any disadvantages or needs for support in these areas.

We would like to examine how the parents’ social background affects the late effects that childhood cancer patients may develop later in life. Research on other diseases suggests that social background may play an important role.

We fully understand that there are questions that you cannot or do not want to answer because some events in the past are difficult to remember or you feel that some questions are too intimate. If you decide to skip a question, please continue with the next ones that you feel comfortable with.

Late effects of childhood cancer and its treatment may occur many years after the initial diagnosis. They may also worsen or disappear. Learning more about when late effects occur and how they change over the life course is thus important for improving therapies, follow-up care, and policy interventions.

In processing, storing, and analysing the information, we strictly follow Swiss legal regulations and data protection laws.

Your responses are entered into a database set-up specifically for that purpose. Your name and address are kept separate in a database reserved for administrative purposes. Both databases fulfil high safety standards. Access to them is restricted to the SCCSS team, with no team member having access to both your name / address and your responses.

Provided that they fulfil strict requirements, the SCCSS team may provide researchers with selected, anonymized data needed to answer specific research questions. As a result, researchers do not know which individuals contributed information to the SCCSS. Research findings – irrespective of where and how they are communicated – can never be traced to the individuals who contributed the data.

Moreover, everybody involved in processing, storing, or analysing information signs an agreement to maintain confidentiality on all information accessible to them.